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A chronically ill must accept his illness and learn to live with it. The quality of life is also important. How to ensure a chronically comfortable life for a patient. What to do so that the disease does not dominate the patient's life? What does it depend on?

Pain, isolation from the environment and lonelinesschronically illis the bottom line of everychronic disease . What can such a person do to live better? Prof. dr hab. n. med. Tomasz Pasierski, head of the Department of Cardiology and Vascular Diseases of the Międzylesie Specialist Hospital, head of the Department of Bioethics, Humanistic Basics of Medicine at the Second Medical University of Warsaw.

What is special about a chronic disease?

PROF. DR HAB. N. MED. TOMASZ PASIERSKI:It is long-term, usually incurable, with accompanying dysfunction and / or disability, requires specialist therapy, rehabilitation, care or self-care. It fills the patient's entire life, interferes with all areas of his / her functioning, and changes the identity. He breaks the normal rhythm of life, leads to a crisis in the relationship with his own body and with the world. It causes physical and mental discomfort from pain, negative tensions and emotions, physical limitations or loss of function.

Taking care of the quality and comfort of life of the chronically ill has, apart from the medical aspect, a purely humanistic aspect. What is the proportion between them?

T.P .: When a sick person is torn apart by an illness, the somatic part "tears" also the existential part. The doctor should be aware of the bottom of the problem, explore both the disease and the experience of being ill, understand the whole person of the sick person, create a common ground of understanding with him, and strengthen this relationship. His task is to adapt the patient to the situation in the best possible way, to make his life - e.g. with asthma, multiple sclerosis, diabetes, dementia-related disease - as good as possible.

Quality of life exists in every life, be it better or worse. And this is the basic message regarding chronic diseases, also those related to dementia. It cannot be assumed that the life of a patient with dementia is of no value. It can be warm, nice, safe, and it can be a soulless social care home. According to the concept of patient-centered medicine, the sentencethe patient about how he or she feels as a result of our intervention is paramount. We give him, for example, chemotherapy drugs for very advanced cancer, we extend his life by 2-3 months, but these months are full of vomiting and weakness. It is the patient who should assess whether this choice is in his or her wishes.

Not only disease, but medical interventions can impair quality of life. What does it look like from the point of view of the doctor and the patient?

T.P .: Realistically, since the essence of a chronic disease is the inability to cure it permanently, an important approach in the treatment of such diseases is adaptation to long-term life with the disease, improvement of the patient's quality of life - often the only measure of medical success! In addition to focusing on the biochemical and physiological aspects of the disease, the doctor also cares about the subjective aspects of he alth - i.e. the quality of life - QoL, and actually the quality of life conditioned by he alth: He alth Related Quality of Life - HRQoL. QoL is an assessment of the patient's aspects of the impact of the disease and treatment on their physical, mental and social functioning. A routine assessment of QoL is recommended, but the overall picture of the patient's life situation is provided jointly by a clinical examination and QoL as an interpretation of the perceived level of discomfort - pain, dysfunction, disability.

How exactly can a doctor use the he alth-related quality of life assessment?

T.P .: This provides the doctor with feedback on the progress of treatment, a valuable supplement to the medical examination. Its monitoring gives current information whether it is necessary to withdraw from a given therapy or if it can be intensified. Optimizing the effectiveness of treatment increases the patient's comfort, which is a value in itself. With every patient, especially in old age, the basic question is: what good will the intervention do? What, for example, will his quality of life be after the use of technologically advanced aortic valve replacement with a catheter? Along with it, the quality of life increases a lot, which is also the basic argument to finance it.

But if we did a very expensive operation, and the patient felt worse after it, it would undermine its sense. The QoL data can be used as arguments to involve the patient in making decisions in the treatment process, in encouraging him to make effort, to manage the disease on his own, in motivating him to self-control and to follow recommendations.

In turn, the patient's readiness to cooperate with the doctor, the willingness and ability to change the lifestyle to one that enables effective treatment (some diseases require a lot of involvement in therapy, learning about the specificity of the disease) depend to a large extent on hiswell-being. It is known that emotional disturbances increase the feeling of discomfort.

Basic quality of life is independent functioning, independence in performing life activities, no physical limitations …

T.P .: Generally - taking care of yourself. In most chronic diseases, the quality of life is improved by broadly understood medical, occupational and psychosocial rehabilitation. However, this is one of the somewhat neglected activities of medicine. It is known that rehabilitation does not heal, but improves, it makes people in their environment better adapted to living conditions. At the same time, for example, in chronic heart failure, the beneficial effects of physical rehabilitation have been documented and included in treatment methods.

Achieving a good quality of life is one of the overarching therapeutic goals, e.g. in patients with type 1 diabetes. How does the quality of life category function in diabetes care?

T.P .: The biggest problem in diabetes is adaptation to therapy - drug administration and glycemic control. It is one of the chronic diseases in which testing the level of life satisfaction of patients seems to be an indispensable element - and although in the current standards of comprehensive effective care for chronically ill patients, the assessment of the quality of life is an element of the norm, it is a subject of scientific research rather than everyday practice.

Any example?

T.P .: One study compared the quality of life of patients using insulin pumps that are more convenient in therapy instead of standard pens. It showed a correlation between the decrease in clinical parameters achieved by the patient - expressed in the level of glycated hemoglobin - and the range of such components of the quality of life as physical limitation in fulfilling social roles and physical functioning. Another study showed that better treatment outcomes are achieved by patients who are satisfied with their relationship with the interdisciplinary team conducting the therapy. Therefore, the role of such a team should be to care about the patient's emotional and intellectual attitude towards the disease and help in solving problems.

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